I have lived with Primary Progressive Multiple Sclerosis for over 20 years . It’s a cruel adversary, but then everyone’s got a monkey on their back, so you just get on with it. Life is pretty good to me, although I’m confined to a wheelchair, I’m pretty independent. I cycle most places, using my hand-cycle and between me and my little Westie, Lo-lo, we’re always about in Fulham, raising awareness of disability and my call of – No surrender!
However it’s not easy maintaining the line when your energy levels can suddenly disappear, leaving you unable to move, with the enemy well and truly at the door. Take the last couple at weeks for example. I recently received a new chair from the
NHS – part of their wheelchair services scheme, which helps people with mobility issues.
Like a new car it takes a bit of getting use too, but I wasn’t aware I’d signed up for a rollercoaster! This thing is like a big dipper, every time I lean forward it tries to tip me out – the other day I landed on top of the dog whilst taking her lead off.
Then there are the brakes. I have this system in the morning for dressing, which is a bit of a palava, involving me holding onto the bed frame and pulling my trousers up, before gently sinking back into the chair – which isn’t then supposed to shoot backwards , with the inevitable consequences.
In terms of its performance on the road, then it’s more akin to driving a tank – heavy and slow, which gives you a good work out, but is not for a speed merchant like me. In the past I might have soldiered on, but the disease, which offers no quarter, means I now have real difficulty in getting up if I go down and this presents a big problem for the new chair.
Luckily I’m blessed by a brilliant support network. Julie, my wife, works nearby and is always on call and a phalanx of neighbours and friends can be relied upon to fill the breach, if I’m down for an eight count.
A recent battle on the toilet, was case in point. A pro-longed battle with a stool the size of an aubergine, left me completely zonked and the effort to transfer to a slightly higher new chair, was a inch to far, resulting in the inevitable re-kindling with the floor.
Fortunately my mate Jeff, who has a key, was coming round for a game of backgammon. He saved the day. I felt a bit guilty afterwards though, fleecing him of £20, especially after he cleaned up the bathroom, but that’s what you do for your inner circle.
The blockage incident should have been the death knell for the new chair with my old steed waiting in the wings, biting at the bit, but it still had its part to play. A few days later, I’d arranged to meet a couple of mates at Tooting Lido for a swim.
None of us were very keen – Louis, one of my oldest buddies suffers from Raynauds phenomenon, losing all circulation in his hands because of cold water, and I spasm like a condemned man in an electric chair, but there’s something about testing yourself, and nothing was going to stop us – apart from the new chair that is.
Transferring that morning didn’t go to plan perched precariously on the edge of the seat, fighting valiantly against
spasms and brakes before crashing to the floor in a naked heap – Bollocks!
I called Louis and Rich, whilst prone on the floor, letting them know I was out of action – the news was greeted with relief, as it had started raining and was cold outside. As I lay there waiting for the cavalry, I tried to think kindly of my upturned chair, at least it had saved us all from hypothermia – Ah well, shit happens!
